No words

I didn't blog my thoughts on Tuesday because I was too angry. Even now I'm not sure how coherent this will be.

J wasn't x-rayed. We have to wait 2 more weeks. On one level, that might seem reasonable - "our" consultant will be back by then, and the only consultant who was there this week wanted it to be our consultant who dealt with it. You see, "our" consultant (Mr M) put on the form last week that he wanted the x-rays done in cast - but that doesn't make sense. None of the others have been in cast. So we wouldn't have been able to compare like with like. So I rang last week and asked for the x-ray to be without the cast - or to have a justification of why the consultant had put "in cast". I was told by the nurse that they'd sort that out, but arrived to find it hadn't been sorted. No matter what I said/did, there was no changing the decision. It's not just 2 weeks though. I requested the x-ray 2 weeks ago - so I've been waiting 2 weeks already. And the last x-rays were October - so it's actually weeks and weeks.

One other point about the x-ray is that I was told that we might not get the result in 2 weeks time. Even more waiting.

And the nurse (she's a spinal specialist) seems to want to become the go-between between me and the consultant, so she's the one who talks to Mr M rather than me and she can relay the information. I don't want a filtered version of info. If I have questions I want to be able to ask him straight away. I'm really not happy about that turn of events.

So no x-ray this week. I am waiting on tenterhooks to see what state J's back is in. Mr M said he didn't know whether J's scoliosis is progressive. The Oxford consultant thought it is likely that it is, because otherwise it would be showing signs of improvement by now. 

If it is getting worse, then we start a whole new ball game. And judging by the track record, there will be endless waiting lists etc as we go into the realms of... whatever!... growth rods? surgery?

My plan was to see what state his back was in and if necessary move heaven and earth to see re treatment in the US.

If the x-rays show the curves have remained static, then I would feel that the wait until 21 March when we have a date to start treatment in Oxford won't be sooooo bad - although that may be cancelled because they are an A&E dept. Still horrendous given that we are losing precious growing time etc. But I can't do anything about the wait and at least the curves wouldn't have got any worse.

To repeat what I've said before: the Mehta type casting should be done before 18 months to get correction. J will be 22 months by then. He's shooting up like a weed- we're losing all this precious precious time/growth.... But if I go down that path in my thoughts, I just end up despairing. This might all mean that J has a lifetime of back problems (and other problems given that it can affect life expectancy, internal organs, fertility etc etc etc). If it had been dealt with when he was very small, he might have had a perfectly straight back by now. How can you not feel angry/despairing when you think about that?????

The other things that made me incandescent were:
1) They didn't think it "relevant" to tell me about J's spina bifida. Even as I write this I can feel waves of outrage and indignation. Relevant??? How can you withhold information like that??? It's not just J who's affected by such a diagnosis! You might recall, I found a note in J's notes in December that the spina bifida had been picked up back in July. I wrote a letter to Mr M to ask about this (as well as other shortcomings with the notes in the file). I still have no response (see point 2))

[It's a side point, but one that also makes me incandescent: I still find it hard to believe that someone I know (who is qualified in a medically-related profession but saw J in a social context not a medical one) thought J had scoliosis at a few weeks old but never said anything. I will never understand that. It's a progressive condition. It can affect life expectancy. And they never said. WHY WHY WHY WHY WHY WHY WHY??????????????!!!!!!!!!!!!!!!!!!  If treated at a v young age, it can be fully corrected. Why on earth would you not tell the parent? If you are wrong, then everyone is happy]

2) I still haven't got a response to my letter dated 21 December. The nurse said it may not have been opened yet!!!!! Ok -Mr M's secretary is on sick leave (long-term sick leave as she had an operation). Ok. But he does have a temp working for him. You can't get hold of consultants by phone. Or by email (not the done thing in the medical world apparently). So you have to rely on snail mail. Waiting 4 weeks seemed perfectly reasonable to the nurse I spoke to. They live in a different universe.

It's not fair on J. He deserves prompt, high-quality care.

All I can do is hope that 1) the x-ray shows the curves are still static (or by some miracle have improved???) and 2) that the Oxford casting does something to help resolve them.






I'm sorry J - all the despairing and pushing and everything just doesn't seem to get us very far. I hope that when you read this when you're older that you understand that mummy tried very hard. I sometimes wonder whether these experiences might steer you to a medical career or something else where you can have a positive influence on treatment for scoliosis. But that's just me hoping for a good outcome in some way, rather than any pressure on you!